Why BigData is running roughshod over the NHS - and what to do about it

The NHS is being treated as both a 'cash cow' and a 'data cow', a string of recent scandals suggest. And now there's another privacy-bashing tech bonanza on the way, as ID cards rise from the ashes of Brexit policy.

It’s no secret. We all know we pay for the NHS through our
taxes. But increasingly we’re also paying for health and care services with the
invisible currency of our most sensitive personal data; our medical
records.

As data companies insinuate themselves into every aspect of
our private lives, in the global Information Gold Rush, we must ensure the
founding principle of the NHS – healthcare for all, without discrimination,
free at the point of delivery – does not fall prey to the curse of free
services: “If you ain’t paying, you are
the product.”

Since long before the care.data controversy, patients have
been paying with their privacy, and it’s almost always the companies that
define the terms of the deal.

In a data-driven world, corporations run rings around the
analogue administrators of the NHS. They siphon off resources and when it goes
wrong simply walk away from their responsibilities – as we were reminded this week when the NAO slammed
the disastrous mess that a part-privatised company made of NHS letters.

How can Google DeepMind continue copying the data of 1.6
million patients from the Royal Free Hospital, despite having no lawful basis to do so? DeepMind paid
negotiators to go to the meeting; the NHS sent doctors.

How can GP IT provider TPP get away with deciding that
it knew better than GPs who should have access to GP records – and get away
with refusing to implement adequate security measures, even when asked? And
then, rather than spending engineers’ time fixing the problem, choosing instead
to pay its lawyers, strenuously denying to all who would listen that it had
done anything wrong?

Because – as we’ve also seen in the fallout from the
Grenfell Tower disaster – commercial interests are allowed to subvert the
public good, whilst politicians and senior civil servants fail to reign in
those interests, putting deregulation above people’s rights to safety, privacy,
and due care.

Whitehall and Westminster seem locked into a failed model of
‘cutting red tape’ to ‘liberate’ commercial entities to exploit us as they see
fit,despite the best efforts of
clinicians and public-spirited technical staff. In the world of NHS IT, we’ve
seen a long line ofpolicy
decisions, ignored warnings, inexcusably delayed action
and bodged responses, such as when the WannaCry
ransomware hit the NHS.

Meanwhile, the announcement last week that ID cards are
effectively back on the table as Brexit Britain draws closer, offers the
possibility of a massive bonanza for whoever gets the contracts – and amassive challenge to the fundamentals
of what we believe as a country.

Having already introduced measures that try to make NHS
staff hassle brown people for documentation, the NHS now faces a
three-way stand-off – a ‘Brexit Triangle’. In the simplest terms: does the
Department of Health now direct NHS staff to hassle people with ‘foreign
accents’, or to hassle everyone, or
do we simply give in and issue everyone with ID cards?

Do we want more cases like Dena Bryant – a deaf British woman who struggles to communicate
verbally, who turned up to A&E with an injured arm only to be quizzed about
her nationality after staff didn’t think she looked or sounded English enough?

It doesn’t have to be this way, of course. The other option,
the choice we first made 69 years ago today, when – having survived the horrors and
deprivations of WWII, and when people’s now-defunct ID card numbers were used
to generate the very first NHS numbers – we as one nation chose to all
contribute to the provision of universal healthcare, free at the point of use,
without discrimination.

We heeded well the words of NHS
founder Nye Bevan, who said: “How do we distinguish a visitor from anybody else? Are
British citizens to carry means of identification everywhere to prove that they
are not visitors? For if the sheep are to be separated from the goats both must
be classified. What began as an attempt to keep the Health Service for
ourselves would end by being a nuisance to everybody.”

So what can you do
to break the stand-off? While forces far bigger and more complicated than
anyone seems to have planned for steamroller on?

It starts with something quite straightforward: inform
yourself, so you can inform others. Get the facts; for, armed with facts, every patient can speak with the
authority of their own lived experience of the NHS.

And while everyone’s been distracted by Brexit, the latest
reorganisation of the NHS – the “Sustainability and Transformation Plans” – is
descending into a divide-and-conquer carve-up.

With a democratic deficit in the NHS that does Theresa May
proud, there is very little scrutiny of the process by which decisions are made
locally around which services will be cut – the amounts of cuts having been
decided centrally, with minimal regard for effects on services. (Meanwhile, DH and NHS
England still want to copy all your medical records into a data lake, tomicromanagehospitalsonadailybasis…)
How would your experience of NHS care have been affected, had those cuts
already taken place?

Since its inception, reorganisation of the NHS has been an
ongoing bureaucratic activity – with the expectation that the public and
patients will continue to be passive observers. So, what if the public’s
interest were to become an active ally to the Hippocratic Oath: do no harm? As
STPs move forwards, whether you wish to be a passive observer of the NHS or not
– based on your lived experience and that of your loved ones – is a decision
only you can make, and talk about with others.

If you don’t think your experience matters enough to speak
up, who do you believe will speak up for you?

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